My life with New Daily Persistent Headache

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The downside to always searching for a effective treatment/reason.

If one day you got sick and you weren’t getting better, what would you do? If one day you got hit with severe constant headache that didn’t go, what would you do? You’d go to a doctor right because that’s not normal and there has to be something wrong with you and the doctor should be able to fix you, that’s their job, right?

But what if they can’t? What if they can’t find anything wrong with you, yet you still have all these horrible painful symptoms that won’t go away. So you go from doctor to doctor for help, trying various treatments, maybe even eventually getting some diagnosis, yet still you’re sick or in pain or both and the doctors can’t make you better, you are now chronically ill or now suffer from chronic pain. Yet you never give up because there has to be something actually wrong with you, an underlying cause, a reason why you are in pain. From doctor to doctor, treatment to treatment but nothing works and you are still sick and in pain and maybe even now depressed.

I have the diagnosis’ of New Daily Persistent Headache NDPH (my main issue), Postural Orthostatic Tachycardia Syndrome POTS and Ehlers Danlos Syndrome Type 3 EDS3. NDPH means I’ve had a constant severe headache 24/7 since the 14th January 2010, POTS means basically that my heart and blood pressure can’t cope with the force of gravity when I change positions, so my blood pools when I stand up my heart rate races and my blood pressure plummets to compensate and my brain then doesn’t get enough blood/oxygen and I faint and have weird seizure type things, EDS3 means my joints are hypermobile because my connective tissue is faulty leaving me prone to joint pain, partial dislocations, dislocations. My POTS is controlled by medication now so I no longer faint and have seizures multiple times a day, EDS3 I experience quite a bit of joint pain and partial dislocations (subluxations) but luckily I have never fully dislocated a joint and I’ve just started physio to see if that will help my pain and subluxations. My NDPH has been the thing that has affected me the most, as you can imagine having a severe often migraine level headache 24/7 can take it’s toll on a person, and if you read my blog regularly you will already know how badly it has affected me.

I was diagnosed with these three conditions in 2011. Since the beginning of my headache in 2010 I had been searching for answers like any normal person in pain would. But the doctors in Dubai were useless and I was getting no where. So I came back from Dubai for the summer of 2011 to go to London and see a bunch of doctors. I started with a cardiologist even though my main issue was my headache, my GP in Dubai noticed that my resting heart rate was constantly way too fast and my blood pressure way too low. The cardiologist in Dubai was pretty useless, told me I needed to stop exercising as my heart was working too hard and if it continued like that I would go into heart failure. Pretty extreme and not really true. To cut a long story short I went to England saw a cardiologist who didn’t say a lot and then sent me to neurologist for my headache. He was pretty useless also other than the fact that one of his team noticed I was hypermobile, she use to work for a professor of autonomic dysfunction and thought I may have POTS, so they sent me to the professor. After some tests I was diagnosed with POTS but he said my headache was completely unrelated and sent me to a headache specialist, where I was eventually diagnosed with NDPH. He also sent me to a rheumatologist because I was hypermobile and the rheum diagnosed me with EDS3.

Throughout this period of searching for answers I was very depressed and actively self harming. I was then put on meds for my POTS which worked and I became stable POTS wise. And my new neurologist put me on medication trials. Then for a period of 3 years I flew back from Dubai every three months to see my neuro, each medication trial lasted a minimum of 3 months, so every three months I would get reviewed to see if the medication was working, but every time they didn’t work so I got put on a new one and so on and so forth. I got no benefit from any medication, all I got were side effects, extreme fatigue and sleepiness, lost of weight gain, and on one I lost over half the hair on my head which wasn’t pleasant and then there’s the fact that I literally was like a walking zombie because of the meds for three years, they didn’t do me any good. I also tried more aggressive treatments, nerve blocks, botox, and infusions, none of which helped the pain in my head either. And I was just left feeling disappointed, miserable, depressed and exhausted after every failed treatment. Last November I was told there was nothing more my neuro could do for me, which yeah hit me hard and made me more depressed for quite a while as many of you know.

But it was probably for the best. All this searching for answers searching for an effective treatment was exhausting and defeating. When I finally gave up my search, it took a while and a lot of therapy for me to get to a point where I can now say that it was for the best. My neurologist saying that to me was obviously not the best thing ever because the best thing ever would be no pain but it was the best thing he could do for me. My search for an effective treatment wasn’t me living my life, it was me being drugged up on headache preventative meds that were causing me more harm than good, that meant I couldn’t try to live my life despite pain.

There is no answer as to why I always have a headache and as I’ve found for me there is no effective treatment either. So I’ve accepted the pain and I’m learning to live despite it, I spent 4 years searching for answers searching for a treatment that would work so much so that I wasn’t actually living.

Giving up the quest for relief may seem scary, but what if the relief just doesn’t exist, what if there are no meds that will make it better. Ask yourself are you living? Because I wasn’t. It’s normal to search for answers and try to see if it can be fixed, but I suppose you just need to know when enough is enough, when the search is doing you more harm than good, when you are not living a life anymore.

If you suffer from chronic pain you probably think I’m crazy for saying this, but it’s been the best thing for me to stop searching for relief and try to accept my pain and try to live my life despite it.

Sian, what I HATE about this is that it’s one thing for ME to accept that I’ll always have chronic migraine and occasional cluster-level headaches. It’s another thing for you, with this ridiculous 24/7 high level of pain that NEVER GOES AWAY. You never get a break. How does one do anything in that state? When I’m above a 6 I can’t do anything. So while I respect what a relief no longer searching for an answer must be, and totally agree all those drug trials were wrong for you (I am only on the useless but benign Periactin myself), I hate that you have to live this way. 😦

Yeah there’s nothing more I or anyone can do to help me, I either accept the pain and try to live despite it or I live in a pit of depression suicidal all the time. Nothing helps the pain and yeah I still have god awful days where the pain is so severe I want nothing more than to die at that moment in time, I suppose with 24/7 pain that no one can do anything about we have two choices depression or life. There was a time I was so depressed I just wanted to sit with my misery and sink into my pit of depression. But now I choose living life despite the pain, it’s not ideal but it’s still a life and it can still be a good one.

Good for you! I have been following your blog for about a year and know things have been bad. I’m proud of you and this attitude is SUCH a good one. Frankly, it is the only thing that really may improve your quality of life… and maybe a miracle will happen and your days of more tolerable pain will become more and more frequent. The brain is an amazing thing. xoxo